Doctors, Doctors, and More Doctors

Let me preface this week’s blog by letting you know this is another diabetes-free entry. The great thing about my Type 1 diabetes (yes, I did say that, “the great thing about my diabetes!”) in all of this thyroid cancer surgery stuff that’s been predominant in my life for the past few months is that in the past month, since I had my total thyroidectomy, I haven’t had any instances of high blood glucose. None. Twice that I can remember I saw my numbers dip into the 70’s, but I felt those coming on and was able to correct without worry.

I do have to say, however, that when you’re thyroidless and on a temporary thyroid supplement, those moments when you get some of the side effects of no thyroid can feel similar to lows, but I’ve been pretty good at differentiating. My thyroid hormone bodily screw-ups feel colder than my low blood glucoses. By that, I mean that there’s more of a chill in my legs and feet; it’s colder than the clamminess of a low blood glucose. Thank goodness for small favors, huh?

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So onto the voicelessness of it all…

As I said, it’s been a month since my thyroidectomy, and I still don’t have a voice. I can produce some sound when I force a lot of air through my vocal cords, but to do so for more than a sentence or two exhausts me, and I can’t talk anywhere that has any ambient noise if I expect anyone to hear me. Needless to say, this has been first and foremost in my life since returning to the world two weeks ago (to work, to social situations, to attempting to navigate stores and clerks as a voiceless adult). Ask people who’ve been in public with me and they can corroborate.

Last Saturday I had a half-hour in which I thought my speech was returning because I was able to make a phone call to my mom and she could actually hear me. I was elated. But that elation was a short-lived; my assumption that my voice was returning was an overly optimistic pronunciation on my part. By the time Kathryn got home that afternoon, I didn’t really have anything — literally — for her to hear.

This morning we went to the University of Michigan’s Vocal Health Center to see laryngology and voice-disorder specialist Dr. Norm Hogikyan (pronounced “ho-gee-kin”) to find out more about what’s going on.

I’ll try to summarize…

After some tests and a laryngoscopy, Dr. Hogikyan said that my left vocal fold (or vocal cord) was weak, exhibiting paresis (partial paralysis); the right vocal fold was paralyzed. So, yes, during surgery, they did monitor the nerves, and while those nerves are grossly intact, they are nonetheless weakened.

Hogikyan says he’s optimistic, however, and believes that my voice will eventually fully recover. The kicker is that it’s difficult to predict when this recovery will be. It can take six months to a year for vocal fold paralysis/paresis recovery. The right vocal fold, with its complete paralysis, is very unpredictable.

There are several possible ways to approach treatment:

One way is to do EMG (electromyography), which would involve passing needles into the right vocal fold to get more information on the muscle, but because there’s partial paralysis in the left fold, he’d only want to perform EMG on the right fold; furthermore, at this point there’s no reason to do EMG, because the information learned wouldn’t change the treatment that he wants to do over the next three months or so.

That treatment: speech therapy and time. For the next three months I’m going to be visiting a speech therapist once a week to try and “better use the instrument I have” while the nerves heal. Speech therapy isn’t treatment, per se. It will not speed the healing process; it won’t help me to heal. But because it’s early for me in terms of being in the world of vocal fold paralysis, giving the nerves time is the best course. Time, I hope, will tell.

I have another visit in May with Dr. Hogikyan to see what progress the nerves/folds have made, if any, and then we’ll see about the EMG.

A third option is surgery. This would be something to talk about when we see where things are after six months to a year (if there’s little improvement). Well, there’s also injection of silicone; they do this into the vocal folds to increase their size to help them close better, or to lessen the gaps. If (if) there were to be surgery way down the line (and I hope it wouldn’t come to that), they’d reposition the paralyzed cord closer to the center so it forms a more full closure when I speak. This isn’t something the doctor would want to do while the left fold is still in paresis, however. No matter now; these options aren’t likely to be utilized (again, I hope that I’m correct in saying this).

For now, it’s speech therapy. Thankfully I really like the guy with whom I’ll be doing my speech therapy sessions. Marc (the speech therapist) told me this morning that some of the things he’ll ask me to say and some of the vocal exercises I’ll be asked to do during therapy will be some of the weirdest things I’ll ever do with my voice.

Know this (because I hear it a lot): I can “talk” now in my loud whispery-somesound way as much as I want and not hurt anything (except maybe your ears). I hear people say “well don’t try to talk” or “save your voice” daily. This is not hoarseness, not laryngitis, not any kind of “save your voice” malady. Unless people are simply sick of hearing me rasp-whisper, there’s no harm in my doing so, no damage I can do to my voice by talking. Of course, because I get winded easily by trying to speak louder than a whisper, I don’t talk very often. The doctor does encourage me to continue talking, because like any muscle, the vocal muscles would atrophy without use.

How am I doing with this news? I’m pretty depressed. But wait! When I say that, I don’t mean I’m in a depressive episode. I’m just quite blue about it. But my attitude is getting better all the time. I wasn’t expecting to leave the doctor’s office with my voice back to normal, but this six months to a year thing is, I admit, pretty disheartening, especially when you add to that the chance my vocal folds may never fully recover on their own (slight chance, but chances have within them the possibility of happening).

I guess I was hoping to hear that maybe I’d experience a return to normal by spring?

Hogikyan said that with vocal fold paralysis this type of prognosis is pretty standard. What he didn’t say, but what Kathryn and I know from reading about thyroidectomies as well as from our conversations with doctors and therapists, is the fact that a vocal cord paralysis this long after a thyroidectomy is not common. Oh, it was briefly talked about in all of the presurgical consultation and literature (and in the document I signed before they cut me open in which I agree there are risks), but an incidence like this, if I understand the Web surfing I’ve done in medical journals, is very uncommon.

I shall continue to remain myself, however, despite the occasional doldrums. I’m returning to my therapist tomorrow after some time off — my thinking the past month was that an hour of therapy when I can’t talk seemed pointless. But I’m going to try; otherwise it may be months before I get back into the therapist’s office with full voice.

My intention is to try to whisper my way through a session; I think that will help me bolster my emotional reserves, because I’m doing fine, but prevention against unforeseen sinks into darkerness (my word, sorry if it’s confusing) is always healthier than attempting to climb out.

I’m at the point lately where I’m rather amused with my lot in life, lovely as it is 99% of the time. Don’t worry about me or for me, because I’m more fortunate than most, despite everything you may read about what I’ve gone and continue to go through.

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Laurel

You’re a total hero, Eric. I’m so impressed with your good humor with everything that you’re going through. We’re all thinking about you and pulling for you!

Lisa

Eric, enough about your thyroid surgery…this is a Diabetes website, where I like to learn about how others are coping with their Diabetes as it gives me insight to my own. It’s horrible about what you had to go through, but enough already. Perhaps you should blog about your thyroid experience on a thyroid website.

Eric L

Lisa,

I want to apologize if my thyroid content frustrates you. My initial reaction to your comment was to be slightly shocked to find you so opposed to my writing about this. And then, honestly, I wanted to come up with all kinds of snarky comments to respond to you with.

But I abstained, and decided I could be more mature than that. I realize that you may count on my blogs for diabetes information, because it is a diabetes Web site (as you say).

I don’t know if you’ve read any of my other blogs, but as to whether or not I blog about diabetes or thyroid stuff, or both, is something that’s given me pause of late, and I’ve shared these concerns with readers, even as recently as two weeks ago. It was the overwhelmingly positive responses I received from readers who said they want to continue to know what I’m going through that has compelled me to keep talking about the complications after surgery (that entry is here: http://www.diabetesselfmanagement.com/Blog/Eric-Lagergren/the-diabetes-bloggers-dilemma/).

If you really need more stuff online besides my own blog entries to find insights into living with diabetes and aren’t able to find them, I’d be happy to provide many other blogs out there for you.

Again, sorry if my subject matter of late has let you down.

Best,
Eric

Deb

I think your account of what you’re going through is inspiring, not to mention that through your blogging about diabetes we’ve come to know you and want the best for you. I may have said this before, but your very good diabetes self-management is part of this whole journey and makes it possible for diabetes to take a lesser role in your writing right now. I want to hear about whatever is most important in the challenges you’re facing now.

Jan Chait

I disagree with Lisa. Eric and I are supposed to write about living with diabetes — he with Type 1 and me with Type 2. Living with diabetes also means living with other things alongside it. Sometimes those “other things” go way beyond issues with family, work, recreation, etc. In addition, both the pancreas and the thyroid are part of the endocrine system. Problems with one part of the endocrine system can often mean problems with another, especially if you have Type 1 diabetes.

And I believe Eric is talking about diabetes as well, by letting us know that his control is still pretty good, despite having his mind on other matters; matters that are more important to him now than diabetes. But it’s the time he spent learning about diabetes that causes him to get through this crisis without sacrificing blood glucose control.

Eric has been writing about living with Type 1 diabetes for what — about two years now? I believe he’s entitled to write about his thyroid cancer for a bit. Perhaps soon he will tell us how he maintains blood glucose control amidst everything else.

Jan Chait

David Spero RN

Hey, Eric. Keep writing about what is important to you. That’s the stuff that’s most likely to have meaning for the rest of us. That’s what blogging is about.

I’ll keep writing about a variety of diabetes issues, as will Diane and most of the others on DSM, so we’ve got that covered.

CalgaryDiabetic

You are an inspiration to all of us. I will stop complaining about my gout attack, since it is a neglligible problem compared to voice loss.

Andrea

It’s important to keep in mind that when one endocrine system “goes bad” it’s likely that others will, too. I started out with polysystic ovaries in my teens, and nobody warned me then to watch for thyroid or diabetes symptoms as I grew older. Took several decades to catch up to me, but I went through thyroid cancer eight years ago (all clear now) and Type 2 started three years ago.

So, I find nothing wrong with writing about thyroid cancer on a diabetes blog, since I think we should all stay aware of “what else” could happen. (Besides, it’s not like you’re the only blogger on this site, or the only source for diabetes information!)

Take care, Eric!

Sand

I have thyroid disease and diabetes and your columns keep me informed. Please keep writing because endocrine system is complex and the more information we have the better.

Mary

Hey Lisa – Obviously you haven’t been a diabetic (or lived with one) long enough to know that having diabetes complicates everything emotional, metal and pghysical in one’s life from a run of the mill scratch or cut to what Eric is going through right now. If you don’t like that he’s sharing what his physical and emotional status is right now, then you don’t have to read his blog. I do believe that Eric, in fact, did aplogize a few weeks back for straying off the course of blogging about diabetes-related issues in his life. So, I would suggest that if you’re so inclined to bash him for not writing about what YOU want him to write about, then perhaps you should take him up on his offer and check into other websites and blogs. We all have become a team to support Eric, so maybe you should go and find another team to play on. And, Eric – we are still behind you all the way!

Leah

Does anyone have experience with antidepressants and their effects on blood sugar in Type 1? Thanks

Suzy

I completely agree with Mary. If you don’t like what Eric is writing about then don’t read it. I really appreciate his writing about all of this as I’m also having thyroid problems as well as Type 2 diabetes. Thank you Eric. Keep up the good work and know that we are all pulling for you and hope that all this resolves itself soon. As my Mom used to say “this too shall pass”.

John Gundrum

Eric thank you for sharing your blog site and your status. I like your attitude, as I know from lung problems it can be easy to just say the heck with things but that is totally not you I wish you well and I hope Lisa understands you have friends that read this for your health updates no matter what the situation may be.

Cathy

I look forward to reading your blog weekly. I understand that being diabetic affects every aspect of your life as it does mine. We are not diabetics in a vacuum where nothing else ever happens to us. Wouldn’t that be nice! I am encouraged by the way you handle non-diabetic complications as well as the ones caused by diabetes. Hang in there and this too shall pass. There may be something we can all learn from your struggles. And that is the reason I come back again and again to this website and your blog.

Fay Lambie

I understand Diabetes and thyroid disease often go hand in hand. As many of you mentioned it’s all part of the endocrine system. I also had a thyroidectomy. (Fortunately I did not lose my voice.) I agree that Eric is brave to put it out there and I also very much appreciate his experience feeling cold, the lows and differentiating those feelings from low glucose levels. My thyroid sugery was quite some time ago so it never occurred to me that the feelings I had been attributing to low blood sugars may actually be thyroid-related (because your thyroid levels can also fluctuate). But when I think back I can remember those feelings pre-diabetes. So Lisa, you may want to reconsider and read what people have to say. You just may learn something. And it could happen to you. Best of luck to you Eric.

Carol

Eric, all the best for your continued progress. Your blog is about “living” with diabetes: emphasize living. Living includes dealing with all the curves and bumps along the way. You’ve had more than your share. Unfortunately when a person gives consent for surgery and is informed about all of the possible risks, no matter how statistically insignificamt, when you are the one in whom a complication occurs it’s devastating. Please continue to blog about your life in its entirety and know that most of us are supportive of you as you continue to work at recovery.

SUSI B

ONE OF MY FRIENDS HAD THYROID SURGERY LAST SUMMER. ENDED UP WITH A TRACH, THEN PARALYSIS OF BOTH VOCAL FOLDS…IT TOOK ABOUT 4-5 MONTHS FOR HER TO GET HER VOICE BACK…LAST CHRISTMAS SHE WAS SINGING CHRISTMAS CAROLS WITH ALL OF US…SHE ALWAYS HAD SUCH A BEAUTIFUL SINGING VOICE….I BELIEVE YOU WILL BE JUST FINE.

JL

Eric-

Thanks for writing about your thyroid issues…

As readers, we may need to maintain an open-mind as to the cross-segments of people with diabetes who also suffer from another serious condition.

For me, it is my thyroid I struggle with, even more than blood sugar. My father may struggle with sleeping disorders, neuropathy, unexpected hypoglycemia. My grandmother may have had an amputation. A family friend may also be struggling with CVD and high-cholesterol. A friend at church might struggle with vision problems. Someone sitting next to me in the endo’s waiting room may also have celiac disease. Etc. Etc. Etc.

With the growth of online, Diabetes is a community, not just a condition. And, with all the potential complications that are out there – even for someone with great blood glucose control – we ALL should keep an open mind that members of this community deal with such a diverse array of personal health matters.

As a final note, you do a great job talking about the emotional part of all of this, and we wouldn’t want to lose that. So, please keep up the great work.

We should not let one bad apple get in our way of seeing a beautiful, diverse Apple Tree.

Helen Mueller

I came to this blog post a little late, and am
glad to see the outpouring of support you have
received. I too had a total thyroidectomy due
to cancer and I lost my parathyroid glands, all
four of them. Oh, they are still there, they just
don’t work. At all since Feb 2002. I recently
read about someone who is regaining their
use post 30 years of loss. I know someone else,
who, like you, lost her voice after her surgery
when they were going in to remove some tissue
and found cancer. She too went into speech
therapy, driving to SF, about 90 miles from
here, for her sessions. And her voice came
back! Good for both of us because I was not
able to hear her. As for me, I weigh about 30
pounds more than I did then, and I needed to
go the other way. Eventually, dealing with
the vitamin D analog, and the extra minerals
became second nature and it receded into the
background, alongside a host of other problems.
And with all the possibilities offered to you,
there is always hope, for if one thing doesn’t
work, they can go to another. Helen M.

Gayle Capps

I agree with most of you posters; living with diabetes includes all the rest that life has to offer, including those things we would prefer not to deal with.

One never knows with diabetes just what other “villain” will pop up. Knowing that we have dealt with diabetes successfully (most times)gives us the wisdom and confidence to handle new problems if and when they arise.

Eric is a terrific role model for all of us so I’m hoping we can all listen to him and take whatever it is we need from his blogs.

More power to you, Eric!

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